As outpatient access to medical records and clinician notes becomes more common, this information still struggles to flow to most inpatients. In the hospital, health issues are more urgent, and patients might not even be conscious. There's a lot more at stake and a little more hesitation about opening patient records.
This hesitation is pervasive, inside and out of the hospital. Two-thirds of physicians reported at least some reluctance to share records with their patients in a recent SERMO survey. When the social network for doctors polled more than 2,300 physicians, 49% said that access to all medical records should only be given on a case-by-case basis, 34% said patients should always have access to their entire record, and 17% said no, never.
Patients have long had the legal right to access their records—including clinician notes. Founded on this premise, the OpenNotes initiative in 2010 conducted a yearlong study of more than 100 primary care doctors from 3 medical institutions who began sharing notes online with their patients. Results showed that 77% to 87% of patients across the 3 sites reported that seeing their notes helped them feel more in control of their care.
Since its inception, OpenNotes has grown to about 35 health systems, which give about 5 million patients access to clinician notes, according to Melissa Anselmo, national program director.
However, she said, opening notes on the inpatient wards has been a slower process. Some hospitals provide inpatient access to electronic health records (EHRs), and others facilitate the use of patient portals and personal health records (PHRs). In a more novel approach, a medical center in Minnesota now gives progress notes to ICU patients or, if unconscious, their family members.
When it comes to opening records, doctors may be apprehensive about patient worry and confusion—not to mention extra workload—but in a pilot study performed on a medical unit at the University of Colorado, these consequences never materialized. In fact, patients reported less worry and confusion after using a study-provided electronic tablet to access test results and other EHR information. As an added bonus, clinicians' concerns about extra workload decreased after the intervention.
Before the pilot, some clinicians weren't convinced patients would understand the information and thought that giving them access might even be dangerous in the wrong context, according to lead author Jonathan Pell, MD, an assistant professor and hospitalist at the University of Colorado Hospital in Denver. “But the majority of the providers said, ‘It's their medical record, it's their information, let them have it,’” he said.
Dr. Pell said the results of his study, published in the May JAMA Internal Medicine, were mostly unsurprising and actually paralleled the effects of open access on the outpatient level. On the disappointing side, patients were not able to catch medication reconciliation errors, and they mostly used their records to know when to ask their nurses for their medications.
All plain-film radiology results were released to patients immediately, but findings from certain scans and tests were delayed by 7 days. “New cancer diagnoses and new HIV, we didn't want patients to get on their devices without a provider around to talk about what that meant,” Dr. Pell said. However, patients could monitor their progress with other results, such as hemoglobin and lipase levels and blood count, “just as fast as their doctors were,” he said.
Although generally patients reported liking the transparency, control, and knowledge, the access seemed most useful for already empowered patients, according to Dr. Pell. “But there are patients who come to the hospital and are sick and have lost that sense of control, and I think those folks just don't really engage in it regardless … This is good technology, but it may not be for everybody,” he said.
With a little training, however, most patients are able to access the Internet on a tablet and use it to view their health data, according to a pilot study published in the June 2014 Journal of Hospital Medicine (JHM). The study gave 30 patients tablet-based access to their PHRs through Epic MyChart.
Most patients—despite being first-time PHR users—successfully viewed their medication lists and appointments. “We also wanted to see what patient satisfaction was like beyond being able to do it: Did they find that this was something that was actually engaging and interesting and useful to them? And the answer, overall, was yes,” said lead author S. Ryan Greysen, MD, MHS.
A follow-up study of about 100 patients focused on frequency of access to the PHR or the patient portal both during and after hospitalization, and preliminary results showed that patients who were given focused training were more likely to continue accessing their information during hospitalization and after they went home, said Dr. Greysen, an assistant professor in the division of hospital medicine at University of California, San Francisco (UCSF).
Another UCSF study, published online in April by JHM, showed that out of 152 patients, about two-thirds had brought 1 or more mobile devices to the hospital, and the majority had been actively using those devices for health-related tasks during the hospital stay. However, less than half of study participants who brought a device to the hospital actually used their patient portal. “So a lot of them were Googling things,” Dr. Greysen said. “That speaks to the fact that the portal is still not the most user-friendly thing.”
Technology at the bedside
Dr. Pell said part of the reason for his study was to prepare for his hospital's upcoming adoption of a new EHR module that allows inpatients to message their clinicians, get information about their care team, and view their own vital signs, lab results, and schedules. Dr. Greysen said his hospital is getting the same technology, Epic Systems' MyChart Bedside, early next year. So far, about 22 hospitals from 17 organizations have adopted the module, according to Epic.
But it doesn't take the latest in technology to give inpatients access to their records. In another recent pilot, ICU patients or their family members were given a paper copy of the assessment and plan section of their progress notes. According to yet-unpublished results, 74% to 86% of the participants said that receiving doctors' notes improved their understanding of their health conditions or increased their feelings of control. There were only minor effects on physician workflow and note-writing practices, according to study author Craig Weinert, MD, MPH, medical director for adult acute care at the University of Minnesota Medical Center in Minneapolis.
But physicians weren't quite convinced of patient benefit. In survey responses, most clinicians were neutral or weakly supportive when asked if note sharing improved patient education or care delivery. “If doctors don't know what patients are understanding, I think they assume that everything's OK … That's why I think the benefit of OpenNotes is that it's an enhancer or a reinforcer of the verbal communication we do all the time,” Dr. Weinert said.
The hospital recently started providing notes on a routine basis in its medical and surgical ICUs, he said. By the end of the year, the plan is to give patients access to their notes in all the main medical and surgical units of the hospital. Dr. Weinert said the hospital's note-sharing practice will eventually move from paper to electronic once the technology is available.
That is likely to happen soon for some hospitals. An update of Bedside, the Epic system, planned to occur in the next few months, will include new features, such as the option to share physician notes with inpatients, according to Janet Campbell, vice president of patient engagement at Epic. The company's patient portal already offers that capability for outpatients, said Eric Helsher, vice president of client success.
One incentive for technology vendors and hospitals to offer greater patient record access is the need to meet meaningful use criteria, which include improving quality of care and fostering patient engagement through EHRs. Outpatient-focused athenahealth has worked to allow hospitals to meet the criteria through patient portals, which give patients the ability to view lab results, medication therapies, vitals, and some physician notation, according to spokeswoman Caroline Smart.
The future, from the past
While inpatient access to physicians' notes is still relatively rare, future inpatients may well expect that their hospitals and hospitalists won't leave them sitting around all day anxiously waiting for results. “We did get 1 comment from 1 patient that said, ‘This could be a defining reason why I would come to this hospital as opposed to going to another hospital, knowing that during the hospitalization, I'm totally engaged,’” Dr. Pell said.
Beyond EHR access and open notes in the inpatient setting, the next step may be the patient-controlled health record (PCHR), “where a patient can decide which doctors see which of their notes and can actually contribute to their own medical record,” Dr. Pell said.
One might call this increased focus on patient control a revival. Back in the late ‘90s, Isaac Kohane, MD, PhD, and Kenneth Mandl, MD, MPH, developed the original personal health platform, the personal internetworked notary and guardian (PING, renamed Indivo in 2006). The Harvard Medical School professors said the idea of a PCHR was disruptive at the time, but it's gaining new life among a new crop of young physicians committed to open data. The main use of the PCHR is the ability to perform across different health care institutions, each likely having its own EHR system, Dr. Kohane said.
“We were way too ahead of time, but we've gone back to the point where people [have] the same understanding we have, which is that patients might actually be the vehicle,” he said. “And, by the way, patients have a reasonable right to expect to be able to see all their record, and I do think that personally controlled health records are going to have a new life now.”
Dr. Mandl added, “Does the whole health system think this way? I would say no. I think it's the leading 5% of it right now. If you go into a boardroom, I think this will still be a surprising suggestion about how funds should be invested in many cases.” But over the next 5 years, converts to the idea of a patient-driven system could grow from 5% to 30% of the health care market, he predicted.
This shift to patient control will take some time, Dr. Kohane said, “but I predict by 10 years from now, more clinical data will be stored in the PCHRs than in the EHRs.”